Part 2 of the Post I wanted to post last night

As promised, I actually had quite a bit more to say and this was the part that tripped me up last night when I was so sleepy. Just a warning, this is going to be one of our longer posts.

Jong was having a few rather tough days up till last night. In fact, he was having such a tough day the day before yesterday that for a while I was more worried about him than Isaac. Also, as I mentioned in my post the day before yesterday, I was starting to feel impatient with Isaac’s progress since we seemed kind of stalled. On top of that, one thing I have been working on is trying to find a good hospital that we can potentially move Isaac to when he is more stable. I will get into more details about this later but after talking to people, our first choice would be Red Cross Hospital in Hiroo, so with the help of someone to help me translate, we called Red Cross’ NICU in the hopes of setting up an appointment to talk to one of the neonatologists just to discuss about the possibility of moving Isaac there later. However, I was very disappointed as the nurse we spoke to said they won't meet with family members directly and we have to go through our current doctor who has to recommend us to them. We weren't ready to talk to our current doctor about this potential move yet for various reasons and I just wanted to find out more about Red Cross and lay some groundwork before we talk to our current doctor. But we are again confronted with our usual frustration of living in Japan – red tape. So I was pretty bummed out when we were driving to the hospital because I had let myself get a bit excited imagining Isaac at Red Cross which would allow me to spend a lot more time with him. I started feeling very helpless as I couldn't effectively advocate for Isaac's interests because of the language difficulties. I actually felt that it was almost like social services came and took our son forcibly away as we are only allowed to see him for an hour each day and we seem to have no control over his welfare.

So on our way to the hospital, Jong and I were talking and I was thinking about why God has given us such a difficult situation – it sometimes almost seems harder that we are mourning one child while having another child so fragile and struggling so hard in NICU. It then hit me really hard that God has given us this very difficult trial because He loves us so very much. He loves us so much that even though it hurts Him more than any of us to see us suffering, He still makes sure that we are go through these trials so that we can truly be changed in our hearts to become better children of His, so that we can experience the true joy of having an intimate relationship with Him and so that we can have the peace that passes all understanding by walking so closely with Him. This part really hit me because it is so difficult for me to watch Isaac struggling with all the tubes and the IV. In addition, every time we see him, we see extra needle holes and bruises from the hospital’s attempts to draw blood for testing and to change his IV. It breaks my heart to see our precious tiny teeny baby having to suffer but I know all these things are necessary for Isaac to continue to remain stable and heal. How much more painful it is for our Father in Heaven to watch us suffer while He shows us how to share in His joy and peace.

It is becoming more and more clear to me that God has really great plans for Isaac. And God is molding Jong and I to be Christ-centered parents so that we can make sure that Isaac grows up learning to love his God with all of his heart, his soul, his mind and his strength. God is teaching us to be strong for Isaac as Isaac will not learn this if we let him take the easy way out each time he encounters difficulties in his life. We will have to suck it up and watch him work through problems and trials while leaning on God.

I also want to say a few words about God’s plans for Rachel. It is clear to us that Rachel’s work on this earth was to give Isaac a chance to live. But I also realized that I have learned so much from our little girl. Her selflessness and sacrifice have humbled me so much. I grew up pretty self-centered and instinctively, I always worried about my own comfort first. It shames me that I was so whiny and complained so much about my physical discomfort during my 5 weeks of bedrest while she was so brave and strong and suffered so silently – she was basically shrink-wrapped by her sac without water those 5 weeks; she was not able to move and on top of that, Isaac was on top of her creating more weight and pressure on her whenever I had to get up to use the bathroom, shower or for my daily check-ups. I recently rewatched a short video clip of Rachel shortly after Jong was allowed into NICU to see her after she was born. You should see how hard she was trying to breathe. Her lungs were so tiny as they were not able to grow during the 5 weeks when she had no water to breathe in. But she fought and fought. Why, when I know she knew that Jesus was waiting in heaven to receive her into His arms? Where there would be no pain or suffering for her? I have to believe that she fought so hard because she knew her mother needed to see her alive, even if it was just for a little while.

Of course, as usual, after Jong and I started losing faith and despairing, God again blessed us with a great visit with Isaac last night. When will we learn to have more faith? When will our hearts finally understand that we just do not need to worry or fret when we should know God is always on our side and that He has and will always be there for us?

I also wanted to explain a little about why I want to move Isaac into Red Cross Hospital in Hiroo. I learned late last week that Red Cross Hospital has the biggest NICU in Tokyo (which also means it is the biggest NICU in Japan) and that it is one of if not the best NICU in this country. It is also only a 15 minutes drive away from both work and home for me. It has much more flexible visiting hours with no limitation to the number of hours one can visit as long as its within their specified hours (which goes till 9 pm). The most important reason why I want to move Isaac there is from everything I have read and almost every preemie mom has told me that studies have proved that it is better for Isaac’s short term recovery and long term health for Jong and I to spend as much time as possible with him. This will be even more important when we are allowed to hold him and do kangaroo care (holding him skin-to-skin on our chest). Studies have shown that at least 3 hours a day of kangaroo care can help preemies significantly improve their breathing and preemies who get kangaroo care go home sooner. Kangaroo care can also improve other things like, for example, his digestion. In addition, I think it is very important for him to be in a hospital near to where we live because after he is discharged, I want to be able to go to a hospital that knows his medical history very quickly and easily when there is an medical emergency – which will almost be an inevitability after he comes out to the outside world from the sterile NICU environment. Also, Red Cross is located in a pretty international area so my guess is the English ability of the doctors and nurses at Red Cross will probably be better than at Toho. We are really grateful to all the doctors and nurses at Toho who have taken such good care of Isaac during his most critical time and it actually pains me that I might be moving Isaac away as I know a lot of the nurses at Toho have grown to love Isaac. But I spend 3 hours a day going to see Isaac but only see him for about an hour out of those 3 hours. If he is at Red Cross, I would be able to see him for 2.5 hours for the same 3 hours I spend. Also, unfortunately, Toho’s visitation policy is just antiquated, even in Japan. I have called 4 different highly reputable NICUs in Tokyo and no one has a 1 hour per day limit on visitation anymore. We have talked to the Toho staff about their visitation policy quite a few times earlier on and unfortunately, whoever is the decision maker for Toho's NICU will not change the policy even though the nurses and our doctor do not agree with the 1 hour max.

In any case, we are not planning to move Isaac until his is more stable but I really want to be able to get our foot in as NICUs are often full in Tokyo and I want us to be on the waiting list if there is such a thing so that when he is ready to be moved, we don't have to wait for another few weeks or months. If any of you have good contacts with Red Cross Hospital at Hiroo and is willing to introduce us to your contacts, please email me at rachelandisaac@gmail.com. Also, I would appreciate your prayers for God to open doors for us to get Isaac into Red Cross if it is in His Will. Thank you very much.

Sorry this is getting so long, but I want to leave you with a song that Jong played for me last night as we were remembering Rachel. Here is a link to a page that actually plays the song - http://users.1st.net/teddi/index25.htm. I adjusted the lyrics a bit for Rachel and have marked the words I changed in square brackets.

Go Rest High On That Mountain – By Vince Gill

I know your life
On earth was troubled
And only you could know the pain
You weren’t afraid to face the devil
You were no stranger to the rain

Chorus:
Go rest high on that mountain
[Girl], you work on earth is done
Go to heaven a shoutin
Love for the Father and Son

Oh, how we cried the day you left us
We gathered round your [ashes] to grieve
I wish I could see the angels faces
When they hear your sweet voice sing

God bless all of you,

Sonia

Isaac was 8 weeks old yesterday (31 weeks by G.A.)

I tried to post last night but I was so sleepy I ended up really rambling so I gave up and went to sleep.

First, I will post some good news before I talk about the tough time we had and what God showed us leading up to the good news.

Isaac's blood test result for his infection was still at 0.2. Please continue to pray for Isaac with the help of antibiotics to get rid of his infection completely. Also, I think they might have given him diuretics because it looked like his edema is gone. The good news - he weighed 918 grams. (However, I don't know if they weighed before or after his edema went down). Also, the really good news is the chest x-ray from yesterday morning showed that his lungs were improved again - so much so that they switched him back to the conventional ventilator from the high frequency ventilator he has been on for the past 2 or so weeks since his reopened PDA was discovered. And his oxygen saturation levels were really good the entire time we were there. Praise God. Unfortunately, his PDA is still there.

He was awake when we arrived and the nurse said that his eyes had been opened for 30 minutes and she thought he was waiting for us. He fell back asleep a little while after we arrived but he was moving around a lot in his sleep. He then got pretty fussy and started looking like he was crying (just by his expression but no tears) and looked really unhappy - the nurse tried to calm Isaac down by putting her palms on Isaac but was not that successful so Jong put his palms on little Isaac and daddy was able to calm Isaac down very quickly. Isaac then slept like an angel with daddy's hands on him and Jong was really happy.

This was me earlier in the visit holding Isaac's hands:This is a side view of Isaac's head. His hair is growing a lot too!
I have to run and will try to post about some things that happened before we had our good visit with Isaac later.

Blessings,

Sonia

Our litte superhero

Hi everyone,

Isaac's blood test results for his infection from today is stiil at 0.2 - no change from yesterday. It has to get to zero so we are still praying. It also seems like his edema is back as he looked a bit bloated again today and the nurse said that his urine output was only so-so. Fortunately, his blood pressure is still okay. I am not sure if his PDA could be causing the edema as he did have the same problem before shortly before they discovered the re-opened PDA.

The nice thing today was that his oxygen saturation levels were pretty good today and he was lying on his back. He also smiled a few times for us although they come and go so quick, its hard to capture with our camera.

Isaac looked a bit different today because of his edema and I don't know why, but with his arm and head positions, I think he looked a little like a little superhero cartoon character in these pictures. What do you think?



Yesterday was 3 months from when I was first admitted to the hospital. Today is 3 months since Rachel's water broke. In some ways, I can't believe its only been 3 months. February 28/March 1, 2006 now seem to be the days that we will always remember as the days that everything changed in our lives. My life before 2/28 now seems so distant. Almost like a far away dream. One thing the Lord has really tried to etch into our brains and our hearts these past 3 months is for us to wait in Him patiently -which is still really tough to do because I am a very impatient person. Waiting for Isaac to grow and to heal from his CLD, PDA and other conditions sometimes seems like I am trying to watch grass grow. But then again, its only been 3 months. Its not like I have been wandering in the desert for 40 years. And God has shown us sooo much of His love for us these past 3 months. So I keep having to remind myself - one day at a time, one day at a time...

God bless,

Sonia

Isaac in low rider diapers!

Dear all,

I just wanted to do a quick post before I go back to sleep. Isaac's blood test for infection came back at 0.2 today. We are praying that it will get back to zero soon and stay at zero!

I have been getting a little worried that Isaac's oxygen saturation levels have been dropping quite often when we visit but I discovered something interesting yesterday which I confirmed today. The nurses have been telling me that his oxygen sat levels are usually pretty good (in the 90s) when we are not there and he does much better with his sat levels when he is on his tummy facing his left side, which is towards the wall. However, when we are there, a lot of times he is facing the inside of the room and his oxygen sat levels would hover around high 80s and then sometimes drop to low 80s or high 70s (his alarm is triggered at 87) so the nurse will have to manually puff more air in. Well, it turns out that the nurses try to have him face the inside of the room for when we visit so its easier for us to see him. I went into the separate room to pump milk after our visit today and when I came back out, I saw that they had just changed Isaac's position and his oxygen level was in the 90s. They also did this at the end of my visit yesterday. So I am more relieved now knowing that he really probably isn't crashing as often as I thought.

By the way, we didn't know Isaac was so hip already but it seems like he is already trying to dress hip hop style in low rider diapers! : D
This is what Isaac looked like when his daddy was bothering him too much and woke him up. Here is another picture of his foot. Isaac's feet look more and more like a minature version of his daddy's feet. They have the same toes, especially their big toes - Jong's big toes curl up just like that too!Take care and God bless, everyone!

Sonia

Isaac's infection got a little better and finally, BLUE socks!

Hi all,

We had a step forward today as Isaac's infection got a little better. I don't remember name of the measuring units but his blood test results for infection was at 0.9 yesterday and 0.3 today (I think they test for CRP but am not completely sure).

Jong is still away today so I got Isaac all to myself today. I originally planned to visit Isaac for my alloted hour today and then express milk in a separate room after the visit (during weekdays, when I have less time, I usually express milk next to Isaac's incubator during my one hour visit but that kind of takes away from my visit as I can't pay full attention to him when I am pumping). I ended up spending 1 hour 45 min with Isaac because the nurse started preparing Isaac for a feeding right at the end of my hour and then 15 mins later after she was done, we discovered that the room I was going to use was occupied by someone else so I got to pump next to Isaac's incubator again. It was great spending more time with our little boy. Especially since he was extra cute today (I think I say that almost every day, huh?) ^_^

For most of the time during the first hour, Isaac was sleeping on his back, which is always a treat for us as we don't get to see him sleeping on his back that often. When he sleeps on his back, its easier for us to touch him. So I got to "cup" his bare chest with my hands for quite a while and was able to pray for him and then sing to him with my hands on him. It loved feeling his bare chest with the palm of my hand - it helped me imagine what it would be like to hold him against my heart when we can finally do kangaroo care. Sigh -- I can't wait for that day!!!

I wanted to share a picture of his calf and his foot with you - I don't know if you can tell but his calves and his feet has been definitely getting bigger and chubbier these days. I mean they are still tiny but they are growing!

Also, early in my visit, when I was giving Isaac a foot massage, I notice his feet were a little cold so I mentioned that to the nurse. I also mentioned that they put pink socks on him a while ago so the nurse went and got blue socks and put them on Isaac. So Isaac finally got to wear some masculine clothing. ^_^ Its kind of funny, she put the oversized (for Isaac) socks on and pulled the socks all the way up so they almost reached his knees. Isaac then ended up kicking one sock off - just like his daddy who kicks his socks off immediately when he gets home. ^_^

This is what Jong and I end up doing a lot during our visits. We open the incubator porthole and stare and stare at Isaac's sweet angel face and we just wanna wanna kiss him so bad. I mean, don't you want to kiss this little face? Just looking at him gives me the chuckles because he is sooooooooo darn CUTE! Oh, I almost forgot - Isaac weighed 866 grams today, down from 880 grams a couple of days ago but I think that might mean that his edema is better so I hope the 866 grams is his real weight.

I also want to take this time to thank everyone again for all of your prayers and love. I was reading some of our older posts and everyone's comments and I was again really touched by the overflowing love and support everyone showed us. I am also very humbled by how much our church and especially Pastor Dennis and his wife Judi have been praying for our little Isaac and us. Pastor Dennis and Judi just returned from a tiring trip from the U.S. yesterday and immediately left a voicemail message and sent us an email letting us know that they have been praying for Isaac and us every day while they were in the U.S. Please join us to pray for stamina and strength for Pastor Dennis and Judi as they had to immediately go straight into a strenuous worship schedule immediately after their return - one service tonight and 4 services tomorrow!

I hope all of you will have a blessed Sunday.

In Christ alone,

Sonia

Isaac's infection got a little worse

Isaac got 2 separate visits from Jong and I today. Jong had to travel outside of Tokyo for an overnight trip so he went to see Isaac early, at 1 pm. I went to see Isaac at 7 pm as usual tonight.

I am starting to really understand how the NICU experience is a "two steps forward, one step back" but am praising God that it has been that so far (and not one step forward, two steps back). Jong got to see Dr. Ishii today and learned that Isaac's infection got a little worse today. I had actually thought his infection was not something that we had to worry about anymore because his blood test results had consistently showed that his infection was improving every day until today. In any case, they changed the type of antibiotics they are giving Isaac so please pray that the new regimen will really kill off all the nasty bugs so Isaac can continuing taking forward steps.

They also started giving Isaac antibiotic eye drops today as he has been getting a lot of sleep in his eyes. They don't know if he has an eye infection but wanted to play it safe. You can kind of tell he had gotten eyedrops in the pictures.

Jong told me that Isaac's saturation levels were very stable the entire time he was there. Unfortunately, it wasn't so when I was visiting. Fortunately, there weren't a lot of big dips.

I am really glad is Friday. I feel pretty exhausted at the moment. I am looking forward to going back to sleep some more tomorrow morning after waking up to pump. A lot of times when I look at how sweetly Isaac is sleeping in his incubator, it makes me want to crawl in and snuggle up and sleep with him (Jong wants to do this a lot too). I woke up missing Rachel quite a bit this morning but I have been feeling a lot better since then (right now I just feel sleepy ^_^).

It looks like Jong took some good pics of Isaac today. For some reason, I think he looks like my mom in the picture where he is yawning. Cindy, what do you think?

Happy Memorial Day weekend for those of you in the U.S.!

Blessings,

Sonia

Slightly improved CLD in Left Lung

Dear all,

For quite a while, the nurses have been placing cushions and other wrappings around Isaac to keep him tightly wrapped so he can't move around as much and because of that we could only really see his head and shoulders and not the rest of his body. Today, we finally got to see more of his body including his legs and feet and they have definitely grown! He was weighed again today and weighed 880 ml. That was quite a bit of gain since two days ago on Tuesday when he weighed 821 ml. He looked a little bloated so he might have edema again but we are hoping and praying that at least part of it was real weight gain. Our baby seems to just love moving - as he was more free today, he kept wriggling his little butt like he was trying to boogie. It was soooo cute! Unfortunately, whenever he moved too much, his oxygen saturation levels would drop.

The nurse also told us that today's chest x-rayed showed some slight improvement of his CLD in his left lung. This is the first time we have heard of an improvement of his CLD so we are definitely happy about that. Praise the Lord!

I am pretty sleepy now and wish I could sleep like our little boy. The first picture here is from two days ago and the rest of them are from today. He started out sleeping on his belly tonight but got moved to his side later in the evening. You will see in the third picture, the thing that looks almost like a blanket on him is actually a diaper that is way too big for him! ^_^ you should be able to see how big his belly got in the final picture.

Good night!

Sonia

Please pray for the Turner Family

We have been praying for baby Will and the Turner family since Monday. Baby Will was born at 34 weeks via section and has been struggling with an abnormal swelling of his stomach. Jong and I met the Turner family about a year ago when we were visiting our friends Dorothy and Jonathan in Hong Kong. They are in the same care group (their church's small group) and they have all been praying for little Isaac. The doctors are still trying to find out the exact cause of the problem so they can treat baby Will more effectively. Here is a link to their blog:

http://turner-number-3.blogspot.com/

I think it is so great that we can spread prayer requests so quickly around because of the internet these days. I know a lot of people praying for us got to our site by others linking our blog to their sites. I am humbled that at this difficult time, the Turners also linked our blog to their site and can't figure out why it didn't occur to me to do the same thing for them earlier this week (even though I did post a prayer request and a link to their blog on Hannah's Prayer). I don't know if its a good excuse but I have been extremely absent minded ever since I was hospitalized at the end of Feb/early March. : )

Thank you for your prayers for Isaac and Will!

Blessings,

Sonia

Happy Birthday Daddy!!!

We celebrated Jong's birthday with Isaac this evening and Isaac gave his daddy a great birthday present by breaking the 800 grams mark - Isaac weighed 821 grams today!!

It was actually a rather emotional celebration for us. I think for a little while, it will always be a bit emotional when we celebrate special days. I think its hard for Jong not to think about the past year on his birthday. When we think about this past year, its hard not to get overwhelmed by how much God has blessed us. He gave us two beautiful children who are so brave and strong, even though they seem so fragile and weak in our eyes, and showed us how He uses the weak to serve His Kingdom. He let one of them stay here on earth with us so that when we see Isaac each day, we are reminded of how merciful is our Lord Almighty, how great is His creation and how deep is His love for us. He took one of them back home to Heaven with him so that when we remember Rachel each day, we are reminded of how nothing is ours, how everything we have is a precious gift from God and how wonderful Heaven will be. We are so overwhelmed by God's grace, love and mercy. Yet we also can't help but be heartbroken because we miss our little heroine so much. And I know Jong couldn't help but yearn for his darling angel Rachel to be here to celebrate his birthday with him.

Going back to Isaac, we also found out tonight that they have increased Isaac's feedings to 13 ml/per feeding. Isaac crashed a few times today and we haven't seen him crash like this the past few days so we are praying that its not because his PDA is getting worse. Its tough to know whether it is better to wait for a while with the hopes that Isaac doesn't need to go through a traumatic surgery or to just get the PDA surgery done sooner so that Isaac's lungs can heal faster.

Onto a different topic, Jong and I are thinking more about moving Isaac every day - mostly because we really want to be able to spend more time with him. A colleague told me that Red Cross Hospital has one of the best NICUs in Tokyo. For those of you in Japan, have you heard anything about Red Cross Hospital's NICU?

Thanks for all your continued prayers for Isaac,

Sonia

Beautiful eyes; PDA surgery postponed

Dear all,

It seems like Isaac's PDA surgery is postponed for a while. This is because Isaac has been stable so the doctors want to wait a bit more hoping (and we are praying) that his PDA might close on its own. Otherwise, they are hoping that Isaac can stay stable enough so that he can gain more weight before they perform the surgery, ideally till he is 1 to 1.2 kg.

Isaac looked really good tonight. He woke up shortly after we got there and Jong and I just LOVE it when he is awake because we get to see his bright beautiful eyes!! Our little boy's eyes just melt his mommy's and daddy's hearts! Just a week or so ago, Jong and I were concerned that Isaac didn't seem to blink when he opens his eyes. Well, we are happy to report to that Isaac blinked naturally quite a few times tonight. He also had the hiccups for a little while tonight.



Tomorrow is a day of celebrations for us - it will be Jong's birthday (I won't tell everyone how old he is turning ^_^) and Isaac's 7th week birthday (30 weeks by G.A.).

Good night everyone!

Sonia

Sleepy Weekend, No Weight Gain

Hi Everyone,

I hope you all had a great weekend.

The weather has been erratic in Tokyo this weekend. In fact, there was a spring typhoon that made for some wet moments.

Isaac has been sleeping a lot these days. I think the nurses are still giving him sedatives and I suppose that is best if it means it will help him grow and perhaps improve his PDA. We are still blessed with brief moments of lucidity - flashes of a smile here or a peek there - perhaps because we get pretty noisy and excited every time we see him. Oddly enough I still think that Isaac may have lucked out by being in an incubator for a while as I don't think I'd give him a moments rest if he were home already. I think Sonia is starting to worry about that eventuality!

I don't know whether it is because they had a pause in feeding or perhaps his body is now working on skeletal expansion and assimiliation of the recent weight gain rather than adding weight as he has been losing weight over the past couple of days now. His extremeties definitely seem to be growing - it is amazing to us how much bigger his hands are now (they're still tiny) even though he hasn't grown much in terms of total body length.

Sonia and I are asking the hospital to try something new (for them anyway). Given how little time we get with Isaac, that we aren't allowed to pinky feed him and the likelihood that he will be tube fed for some time, we've become increasingly concerned that he will not learn to associate feeding with all of the wonderful sensations involved in eating. We wanted to be a bit more aggressive (what's new?) in our approach but we compromised with the hospital to at least offer him a little of Sonia's milk on a Q-tip cotton swab each time he is fed so he can at least associate the taste of his mother's milk to feeding. We hope to hear from the doctor today that they are ok with this.

We also hit a bit of a rough patch this weekend on the missing Rachel front. I think a lot of it was (unintentionally) my fault actually. I have been having a devil of a time with tennis elbow (even though I almost never play these days) for some time now and Sonia was able to secure an appointment for me on Saturday morning and I convinced her to come along. I forgot that Saturdays are walk in days at the expat clinic we frequent which generally means masses of children and expectant mothers. I should have anticipated this and should not have brought Sonia but I realized it too late. I think seeing so many pregnant mothers waiting to see our very same Dr. Sakamoto struck a nerve as it was too hard not to imagine how Sonia should have been one of those mothers waiting to see the good doctor in her third trimester with Rachel and Isaac still swimming around in her tummy.

In the end, I think it was good that this happened actually as we certainly can't run away from such things (it would sort of be sinful wouldn't it?) and I believe it will help us with our grieving process.

Our experiences this weekend have helped convince me however that we do need to find another NICU for Isaac so that we can spend more time with him, at least on weekends. I think it is tough enough for Sonia to lactate for one when there should be two but the physical absence of Isaac during those times makes it hard for her to avoid a two to zero mind set. Assuming the PDA surgery goes well, Isaac should be awake more often as well.

Church was interesting this weekend. Virtually the entire pastoral team is away in Los Angeles at the Purpose Driven Conference. We also attended the last service at 3:30 and while we are not certain whether it was because of the absence of our music ministry pastors (kidding) or simply because the time slot is more attractive to a younger audience (I'm sure it is the latter), the service was full of energy from the band and singers to the volume of praise coming from the congregation. Then again, maybe it is always this way but I'm just to hazy and groggy in the mornings to notice! The Pastors were all sorely missed. Service was great but just not the same.

Sorry for the meandering post. Sonia has been doing all of the posts of late (mostly because I think she does a much better job of it - as evidenced by this attempt) and I wanted to make a token contribution. Please take care and thanks as always for your prayers.

Blessings,

Jong

Isaac's First Pieces of Clothing - PINK Socks!!!

Jong and I got a surprise when we arrived at Isaac's incubator today. Our macho little boy who already knows how to hold a real fist was wearing BIG, FURRY, FUZZY and VERY PINK socks! Apparently, his body temperature was a little low and the nurse decided to keep his little feet warm but they must not have blue socks. He looked so funny and cute as the socks were waaayyy too big for him. Plus the diapers are also still waaaayyyy too big for him. LOL!!

Yes, he thought it was real funny too!!!

We also spoke with Dr. Ishii. It seems like Isaac's surgery for his PDA will probably happen sometime after Thursday. His infection is getting better but they want to make sure its completely gone and he is in a really good condition. He has also lost a little bit more weight - he weighed 766 today. It seems like the few days of scaling back to 10 ml and then 11 ml per feeding affected his weight. But he is now back to 12 ml so we are hoping he will start gaining weight again. Isaac looked really sweet today as he slept.

The picture below is from last night. I don't know why the nurse did this but she used a alcohol-soaked cotton to wipe the pacifier and then basically immediately gave it to Isaac (I caught her doing this as I was walking towards the incubator when I first arrived). Isaac REALLY didn't like it (I am guessing it tasted horrible!) and tried to spit it out. I took out the pacifier as soon as I finished sterilizing my hands with alcohol and waiting for my hands to dry from the alcohol. However, we still thought he looked really cute with his face all scrunched up. Later on during our visit, I finished pumping milk in front of Isaac's incubator and then we decided to steal out the pacifier and then I expressed some of my milk onto it and put it into Isaac's mouth. You should have seen how peaceful and calm he immediately looked after he got a taste of my milk!! We asked today if we can do the same thing (without disclosing we did it already) and Dr. Ishii said we could dip a Q-tip with my milk and let him taste my milk. We are hoping that they will really do so when he gets fed because I want him to associate getting milk in his stomach with the taste of my milk.
I REALLY like weekends now that I started working again. During the weekdays, I literally have no time left in the day since by the time we get home from work and our Isaac visit, its usually already 9 pm and we wouldn't have eaten dinner yet. Now that my parents are gone, we will be eating dinner out (or taking dinner home) so it will even be later before we get home. After we get home, I still have to pump and Jong and I usually both have to pick up a bit of work again before we go to bed. On weekends, there seems to be so much more time even though it still zips by because its already Saturday night! :)

Hope you all have a good weekend!

Sonia

Rachel's Corner

Dear all,

I just wanted to share a couple of pictures of the place where we are keeping Rachel's ashes right now. My mom surrounded her little urn with small purple flowers (I think the purple flowers reminded my mom of forget-me-nots) and cards we have received from friends and loved ones.

I received the white flowers on the right from my close college friends and roommates yesterday. I received the orchids on the left while I was still in the hospital on bed rest. We were really hoping that Isaac and Rachel could stay inside me while the orchids bloom. They are still blooming!
Actually, Rachel's flowers are cherry blossoms. This is because she was born and went to heaven when cherry blossoms were in full bloom in Tokyo. Cherry blossoms are so ethereal -- they are so beautiful when they bloom but they only bloom for a such a very short time. When they start falling off the trees, the petals float down slowly and quietly like snow. However, unlike snow, even after they fall to the ground, the petals do not get brown and dirty but remain beautiful and pure. Just like our dear little heroine Rachel - her life here on earth was very short but very beautiful and she was so pure and gentle.

Rachel, you were such a beautiful brave little girl and you helped Isaac, mommy and daddy so much by being so strong and brave. We couldn't be more proud of you baby girl. Mommy and daddy think about you all the time and we miss you terribly. But we know you are very happy in heaven. We love you very, very much!

Sonia

Always missing someone

I seem to spend a lot of my life missing someone. When I was a kid, my dad used to spend most of his time working in another country so I used to miss him a lot. Then I went to North America for school and would miss my family and friends back in Hong Kong a lot. Jong and I spent 6 out of our 7 1/2 dating years dating long distance and then after we got married, he spent a lot of time traveling so I ended up missing him more often than not. I think that was all to train me to get used to missing Isaac ALL THE TIME! It takes me 2 hours round trip to see him for an hour and I spend the rest of my day missing him. If only he wasn't sooooooo darn cute may be I would miss him less. ^_^

Sometimes when I look at Isaac and he is soooo cute and I can't help but wonder what Rachel would be like if she could have stayed with us. Its amazing that some of Isaac's personality seem to be coming through despite the fact that he is sleeping most of the time. I wonder what Rachel's personality would be like. I think I will also have to get used to missing Rachel all the time until I finally get to meet her again in heaven.

Isaac is such a ham. Look at his expressions! He also does all these funny things with his hands all the time. He just knows how to melt our hearts. I have noticed that his eyebrows are pretty light colored for an Asian baby and now his hair is looking light too. What is going on? My dad claimed that he had pretty light colored hair (for an Asian) when he was a kid. May be that was the reason.Jong and I are still amazed and awed whenever we see Isaac - God's creation is just so amazing and to think He blessed us with this precious child to look after!

You may notice that Isaac looks like he has been losing a bit of weight. They actually weighed him today and he weighed 768 grams (yes, just 2 days ago he weighed 786 grams, isn't that weird?). Its probably a combination of the diuretics they gave him to get rid of his water retention and also the fact that they scaled back his feeding for a few days as his stomach was getting too big and pushing his diaphram up (he was back down to 10 ml per feeding for a few days). They put him back to 12 ml now so we are hoping that he will start gaining healthy non-water weight again. Unfortunately, I don't think he will get to 1 kg by his daddy's birthday like we hoped. In fact, if he really gets surgery next week, he will most probably lose more weight as they have to stop feeding him before and after his surgery. God is really trying to teach us how to be patient because it takes a lot of patience to get through NICU with a micropreemie (can you tell I am getting just a tad impatient for him to come home with me????)!!! ^_^

God bless everyone!

Sonia

Yesterday was Isaac's 6th week birthday

Hi all,

Yesterday was Isaac's 6th week birthday. Jong arrived in Tokyo late afternoon and we were able to get to the hospital in time to see Isaac, albeit a little late. Isaac pretty much slept through the whole visit and Jong was pretty jet lagged too so we didn't have much to report.

We went back this evening and was able to talk to Dr. Ishii. Unfortunately, Isaac's PDA is still there and his surgery is still tentatively set for May 25 although that may change depending on his condition. We must first make sure his infection is completely gone. The good news is his blood test results are showing that his infection is getting better.

We also found out that they weighed Isaac yesterday. He weighed 786 grams. It turns out that his rapid weight gain last week was partly due to some unhealthy water retention. The doctor prescribed diuretics and Isaac pee peed a lot so that's probably why this time his weight didn't go up as much. I have to say we were a bit surprised at how quickly he got so pudgy last week and were a bit concerned. He was face up today and we think his chest is definitely bigger so it seems like he is growing well. Now we just have to make sure his PDA heals so that his CLD can heal as well. I really can't wait for him to get off the ventilator so that we can finally hold him! I just LONG to hold and kiss him so much!!!

It seems like he is reacting well to the high frequency ventilator. His oxygen saturation levels are more stable and he is crashing less. I joked with Jong that Isaac is going to get used to the vibrating feeling and after he goes home, we will need to drive him around all the time to put him to sleep. I guess we will have to get him one of those vibrating chairs. : )

Take care and God bless,

Sonia

Isaac has an infection; will probably have surgery for PDA

Dear all,

I spoke with Dr. Ishii yesterday afternoon about Isaac's condition and it looks like he will probably have surgery. When I spoke with Dr. Ishii, the surgeons haven't decided when the surgery will be yet but it sounds like it might be May 25. I should know more tonight. Isaac's PDA is 2mm. For a normal baby, that is not very big but for a baby like Isaac, it is. If Isaac does have surgery for his PDA, he will be put under general anesthesia. The heart doctors are going to keep monitoring Isaac with echograms this week to see how his PDA progresses.

Also, based on blood test results from yesterday, Isaac now has an infection. Fortunately he didn't have a fever and also looked okay - he was moving a lot so the doctor didn't seem to concerned. They started him back on IV antibiotics, please pray that the antibiotics will work fast and well and kill all the nasty bugs.

Despite all the above, Isaac still looked really cute yesterday. He was face up so he was moving his arm around a lot. I spent a lot of time talking to the doctor so I missed a lot of funny positions with the camera but I did capture some. One thing Jong is going to be very proud of - it looks like Isaac already knows how to hold a real fist!! Our really good friend (who surprised me and picked me up at the hospital last week) has been trying to teach her 2 year old boy how to hold a real fist with no success - he keeps holding a girly fist with his thumb sticking out. I think she is going to be jealous! : )







I wanted to post last night but fell asleep and now I have to run. God bless everyone!

Sonia

God's every day blessings

Dear all,

Our always faithful Lord answered part of my prayer request from last night. My mom had a great visit today. Even though she was only allowed to stay for 15 minutes, it was as if Isaac knew the 15 minutes were very precious for his grandmother. Isaac was awake and active through out the 15 minutes and moved his arms and legs a lot, as if to show my mom that he is alive and well and she just needed to keep praying but not to worry. He opened his eyes quite a bit and had a whole slew of funny expressions. But most importantly, he smiled for his grandmama. My mom was a happy camper after her little visit.


He looked better today than yesterday and I got used to the vibration from the high frequency ventilator (I think he did too). Although his oxygen input level was quite high (it used to be 35% and now its 45%), at least he didn't truly crash even once when I was there. I will have to ask the doctor on Monday whether it might be less harmful for Isaac to be on the high frequency ventilator as opposed to the conventional ventilator while the oxygen input level is so high. He has such beautiful eyes, I really hope he doesn't end up getting bad ROP (and of course, I don't want him to have any problems with his brains either).

I am once again humbled by how incredibly faithful and merciful God continues to be. Despite my panic attack and lack of faith last night, He still blessed me with such a great visit today to give me comfort and peace while I wait till early next week to find out what our next step should be to treat Isaac's PDA. I have been praying for the Lord to heal Isaac's CLD, and now I am holding out hope that once his PDA is treated, his CLD will start improving rapidly. If he continues to gain weight at a fast pace and if his CLD can start really improving, there is a good chance that he can come home earlier. I really, really can't wait for that day!!

Here are some cute pictures of Isaac from today. Thanks for your prayers and please continue to pray!

Please pray extra hard for Isaac - his PDA came back

I had a rather tough visit tonight. First of all, I arrived to discover that they switched Isaac from a conventional ventilator to a high frequency ventilator. Using a high frequency ventilator can be visually intimidating as Isaac's body was vibrating because of it. As I have not read up on and didn't know anything about high frequency ventilators, I was scared during the visit. But I came back to read in my Preemie book that high-frequency ventilators are basically a newer technology and although like anything there could be side effects, it is not necessarily more harmful than a conventional ventilator.

But things actually got worse. I kept asking the nurse whether Isaac was daijoubu (meaning ok in Japanese) and the nurse kept saying that Dr. Ishii will come talk to me. So I knew it wasn't going to be good but I was thinking may be his CLD got worse again. But it turned out to be something worse, something that I thought we have already gotten pass and not have to worry about anymore. When Isaac was born, he had PDA (patent ductus arteriosus - an opening between his heart and his lungs). Micropreemies almost always have PDA after they are born. Isaac was treated by medication and his PDA supposedly closed up. Well, Dr. Ishii told me tonight that Isaac's PDA reopened again. Which may be the reason why he has been having so much lung problems lately. Unfortunately, the medication that was used before is only really effective during the first 2 weeks after birth and beyond that, the risks of the side effects may outweigh the effectiveness/benefits of the medicine. The other options are to monitor and wait and see if his PDA will close back up on its own assuming his condition does not worsen or surgery. Dr. Ishii said that Isaac's PDA can close up on its own but the chances are low. On the other hand, Dr. Ishii also seemed quite concerned about surgery (who wouldn't be for a tiny baby like Isaac). He is going to consult with a pediatric heart surgeon on Monday or Tuesday. So please pray for another miracle for our little Isaac - that his PDA would heal on its own very soon. If they have to perform surgery on him, its not the end of the world. But surgery is surgery, esp. for someone so tiny and fragile, and Isaac would have to go under general anesthesia.

Anyway, I am pretty exhausted from tonight. Please pray for Isaac, for wisdom for his doctors and for vigilance and care from his nurses who need to monitor him a lot closely now to make sure he is getting the correct amount of oxygen. Please also pray for my mom. I didn't tell her tonight because I know she will have trouble sleeping if I did. But I will need to tell her tomorrow morning and she really hasn't been able to deal well with bad news lately because of her high blood pressure. She is leaving Tokyo on Tuesday and I got the hospital to let her see Isaac for 5 - 10 minutes tomorrow. Isaac will not look that great on the high frequency ventilator and I know my mom, it will really scare her and she will really worry regardless of what I tell her. Please pray that she can really trust God and have peace about Isaac.

Thank you in advance for your prayers,

Sonia

Graduated to Preemie Diapers and 779 grams!

Hi all,

I had a little surprise when I arrived to see Isaac today because he has graduated to actually wearing Preemie size diapers! Before today, they just cut up the Preemie diapers and placed it behind his butt. In any case, he looked so cute in them because they are still way too big for him!

I also noticed that he had some water near his eyes so I asked the nurse if that was okay. To my surprise, she said they were just tears and he was crying when she changed his diaper before. This was my first time to see real tears from him. Before, he would have the facial expressions that looked like he was crying but we never saw any tears. I have to think that its a good sign for his eyes that he can produce tears now! Of course, he still can't make any sounds because of the ventilator that is going down his throat to his lungs. Jong and I can't wait for the day we can actually hear him cry. I wonder if we will still like his crying so much after he has been home for a while! The nurse that after he cried, he really wanted his pacifier so when I arrived, I could see that he was really sucking his pacifier pretty hard. In fact, he used his little hand to hold his pacifier up so he could get at it better. I wish I could have given him my pinkie!

I also tried singing to him tonight and I swear I am not making this up but below was what he did after I started singing!!!! I am going to attribute it to my sore throat. : )


He slept quite well through out my visit - again looking like he was dreaming. It made me want to cuddle up with him. Doesn't he look comfortable?


Oh, and I almost forgot. They weighed him again and he weighed 779 grams! He gained 53 grams in 2 days! If he keeps up this rate, he should get to 1 kg by Jong's birthday. You can do it my little boy - that would be a great birthday present for your daddy!!

I thought I would get through a visit without him crashing once, esp. since I didn't touch him and talked too much again (apart from my horrible singing) and he was doing so well. But when I started saying good bye to him at the end of my hour, poor little Isaac's oxygen saturation levels started really crashing. It was by far the lowest I have ever seen him crashed. I kept praying and praying and he finally stabilized after about 10 minutes. He seems to do that a lot - start crashing right when we are about to leave. We are still praying and hoping that with his weight gain, he can really start improving his CLD. In any case, I had a BIG surprise when the elevator arrived for me to leave because out of the elevator came a really good friend of mine. She decided to come and pick me up -- even though she had just worked 2 really, really late nights previously. I was so touched. Friends can be so amazing, don't you think? And God's timing is also amazing because but for Isaac's crashing, I would have left 10 minutes ago and if I didn't check my cell phone (I always turn it off when I go into NICU), I could have missed her! We are really going to miss her and her family when they move to Hong Kong this summer! : (

Take care and God bless,

Sonia